middlesister1
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Matt. Not sure if you’re driving up Sunday or Monday. Traffic can be bad around dc and baltimore. I know the holiday inn near univ of md offers low rates(98) for patients. If you’re staying in Baltimore I would check with hopkins on hotel partnerships.
Thinking of you
CatherineWelcome Amy!
I’m sorry that Matt’s recent developments may have given you the push to join us. My mother has CC and reading some of the posts and also the research articles that Gavin often posts has helped us through this. Since there have been so few large studies completed, it may come down to finding an approach that has showed promising for even a few and then pushing doctors to see if it would be applicable to your case.
We’re all in your corner.
Catherine
Porter-
I am sorry to hear of the latest challenges. Adhesions from surgery are very common and can be painful. The scar tissue grows and connects things together that shouldn’t be (KrisV can surely explain better). Mom got them decade ago from a laperscopic surgery. They did go in twice to fix them, but only when so bad that they caused a blockage in her intestines. Rest of time she just lives with the discomfort since every time you operate, you run the risk of more scar tissue. And, since her last SIRT she has had adhesion pain flare up as well. I’m not sure if radiation can cause the scar tissue or this is finally manifesting itself from last year’s surgery.
Good luck-
Catherine
Dave,
Thank you for sharing. The good news posts truly do start my day off well. It also speaks to how important having a skilled surgical team is in treating CC.
We are very happy for you and your wife!
Take care,
CatherineNot sure, but hope you can feel the hugs coming from the other side of the pond.
I am so sorry for your sorrow.
Catherine
I do have to chime in that although the different specialists at UMD May have disagreed amongst themselves at times about best way forward and at times could have communicated better as well to each other, at no time did we get less than warmth and compassion from ONC, radiologists and nurses. Even people who answer phones for scheduling seem to truly care and by now know Mom when she calls.
It does seem that even within the same facility there may be a bit of egos and turf protection, but we come away with the feeling that it’s because they each want you to get best possible treatment.
Marion, I’ve been trying to understand the off label workings and I thought that since keytruda was FDA approved for melanoma in Sept, it would be possible to get off-label approval for CC (if a doctor backs it). Is it a difference of what they can do versus what in reality they will approve?
Duke, ONC said we might have hard time with xeloda approval but it went though without a problem.
Hi. Just curious if you got a second opinion and where you’re being treated. Do you have a multidisciplinary team that are considering treatments other than chemo? It sounds like chemo is working well but always good to have plan B lined up.
Dear Carrie,
I am very sorry to hear of your loss. My thoughts and prayers are with you and your family.
Take care,
CatherineMom is being treated at University of Maryland Greenebaum Cancer Center.
ONC- Dr. Horiba (who is leaving end of January)
Surgeon who attempted resection was Dr. Hanna
Interventional Radiologist (2 SIRT treatments)- Dr. MoesleinAlthough I do not think they see the numbers of CC patients that some other centers may, they do have the inter-disciplinary tumor boards. We have been very happy with Dr. Moeslein. The ONC taking over has written on genetic mutations being important in treatment of Esoph. cancer, so I’m optomistic that when we meet her, she’ll be willing to send Mom’s tumor for the genetic mapping (we were assured they still have it from the biopsy).
Hello,
Your family has already had its share of triais, I’m sorry your mother now has this added. My mother had radioembolization (SIRT) twice, but she had 6 cycles of Gem/Cis first. The main side effect was fatigue which lasted almost a month the first time and is hanging on even longer this round. However, this time they also put her on xeloda (a pill form of chemo) for 2 weeks before and after the SIRT. And, although I don’t know numbers, I think her dosage was higher than typical. Good news is that the tumors shrunk for first tratment in Feb. 2014 and after the fatigue, she felt fine and at times we felt that it must not be true that she still had this dsease. Scans in Sept still showed no progression, but we decided to go in and do the SIRT a second time with the goal being to kill off the tumor and the left lobe of the liver.
Do you know if the the goal of the treatment is to make her operable? Where is she being treated?
Welcome and Happy New Year,
CatherineDear Tom,
I am very sorry to hear, but thankful that Ben was able to come home for Christmas. Your journey with Ben living life to the fullest with CC for over 4 years and the love and compassion you shared is inspirational to others.
Take care of yourself,
Catherine
